khaarina

Yeah, maybe it is a migraine. I've had similar headaches before and they are occurring more often and getting more severe. I've thought about telling my doctor, but I don't know, it just never seems to help when I tell my doctor stuff and the last thing I want is more meds. With all the symptoms I've brought to him thus far, I'm surprised he hasn't labeled me a hypochondriac. Anyway, this headache is still around, but I think it is getting better, as long as I stay down. Thanks for all the great suggestions!

I have the same problem. My primary doctor says I have POTS, my Cardiologist says, "No, you have NCS." When I asked the cardio what is the difference he didn't really have an answer. When I told my primary what my cardio said, he said, "No, it is POTS." What a mess. I am inclined to trust my primary doctor more because the cardio has never asked me what my symptoms are and when I try to tell him he doesn't want to hear it. He is just basing the diagnosis on the results of my TTT. I don't know, maybe I have both.

Ever since Comic Con (two days ago) I have had a bad headache that I just can't seem to get rid of. I knew there would be some kind of aftermath but I didn't think it would go on this long. I used my wheelchair and drank lots of water and all that good stuff during the event, and I am doing everything I am supposed to do now. Ibprofin helps temporarily, but I'm not sure how much is safe and I don't want to over do it. Anyone have any ideas? It is the kind of headache that makes your head feel like it is going to explode when you bend over, if that helps lol.

Midodrine is really helpful for me, in that it makes me feel better while around the house, but it doesn't help with my standing symptoms. It did help more once my doctor increased my dose from 2.5mg to 5mg 3/day, but I still can't stand for long. I'm thinking of trying Mestinon or Clonidine next. Florinef helps a lot of POTS patients, but it did not help me.

Thanks everyone. Comic Con was a blast. At first it was a little awkward being in a wheelchair because it was pretty crowded, but I got used to it quick enough and I know that I would not have lasted half an hour if I had to walk. So anyone thinking of getting a wheelchair, it is worth it!

I started taking otc antihistamines and that resolved most of my sensitive skin issues (itching, rashes, etc). For excessive sweating I use clinical strength secret when I go out, and regular Secret solid when at home (because clinical is so expensive). I also dress light, change clothes frequently, and use baby powder. Sometimes I take a second shower, but I avoid that if possible because showers are such a pain. My skin doesn't get dry usually, but on occasion I use Eucerin body lotion, feels kind of greasy but I don't think I have ever had a reaction to it. I'm using Dove sensitive skin body wash right now. I'm not fond of the scent but I like the texture and as long as I am on antihistamines my skin doesn't react to it. Before the antihistamines the only body wash I could find that I didn't react badly to were Equate (Wal-Mart brand) Sensitive Skin and Aveeno Skin Relief. Equate is cheaper, but it doesn't lather and I ended up having to use a ton of it per shower, I do not recommend it. Aveeno is more expensive per bottle, but you only have to use a little bit of it because it really stretches. Aveeno leaves your skin feeling very soft and smooth, would especially be great for dry skin.

I don't have a watch yet, but for those of you looking for a cheap HR monitor, there is a free iphone app that uses the camera flash on your phone to read your HR. I have been using it for 2 years and it is accurate. You put your finger over the flash and it takes about 30 seconds to read your HR. You can check it out here: https://itunes.apple.com/us/app/instant-heart-rate-heart-rate/id409625068?mt=8.

I second the white noise idea. I wake up very easily now and once I'm up, I'm up for good, so white noise it a big help with keeping me asleep through the night. Also it is important to go to sleep when you start to get tired. If I try to stay up late, I end up not sleeping at all, probably because the more sleepy I am, the sicker I am.

I took the new wheelchair out to Wal-Mart for a test drive and it went surprisingly well. I expected it to be harder because I usually get sick with any kind of excersize, but I wheeled myself around the whole store and didn't get sick. It was a good workout for my arms, which I need, and when it got to be too much I would just park somewhere and look at books or toys or something and rest for a few minutes, then I was good to go. I went to Books A Million earlier today and decided to walk because I knew I wouldn't be long and after about 4 minutes I was drenched in sweat and sick. Later I spent about 45 minutes in Wal-Mart and felt pretty good the whole time. This is definately going to be a good solution for getting me out of the house. Good timing because I was about to go crazy! For anyone who is thinking of getting a wheelchair, I suggest getting one with elevating leg rests. Mine looks just like this one. You can raise the leg rests pretty easily and they lock in place. Having the option to put your legs up when you are really feeling whoozy is awesome! You have to detach them when folding the chair up, but it only takes like a minute and it is well worth it.

Stairs are rough. I avoid them if at all possible. I have pretty much mastered the shower though. I take quick showers and make sure my Midodrine has kicked in before I get in. I need cold showers because I can't handle the heat and cold water helps with my circulation, but the cold water shock is not only miserable but it sets off an adrenaline rush and makes matters worse. So, I start with warm water (not hot) and during the shower I turn it down a notch over and over as I get used to the cooler water. By the end of the shower the water is cold and I don't mind it. It actually feels pretty good since standing makes be get really hot. I am hyperpots, so not sure if that happens to all of us. Sometimes I still end up having to sit down in the tub for a couple of minutes in the middle, but lately I have been getting through showers pretty well.

Now that I am thinking about it, I'm really nervous too. The last thing I need is to get there and feel miserable. This is the first thing I've been excited about since I got sick over two years ago. Anyone have any suggestions for making the trip run smoothly? It will be several hours, 10am to 5 or 6pm probably. The wheelchair will help a lot, but there are so many variables to worry about, like temperature, people wearing perfumes, the long drive...oh boy.

I expected it to be a bittersweet moment, getting a wheelchair, but I am mostly just really excited to be able to get out and do more stuff. I am so sick of missing out on life because everything involves too much walking or standing. I am afraid I will feel foolish being pushed around, but hopefully I get used to it soon because I'm heading to Comic Con next week to meet one of my favorite authors and I am so excited!

Benadryl has been the best sleep aid for me. I take 25mg every night. If it doesn't work, I take another one and that usually puts me out. Still, sometimes nothing works and I lay awake all night or most of the night, or I wake up again and again and by morning I feel like a train wreck. I haven't found anything that helps in that case but lots of rest and staying hydrated. I used to fight it, try to do things on little to no sleep, but I realize now that fighting it only prolongues my agony and makes the insomnia worse. I can't work anymore anyway, so it isn't a huge deal if I am stuck in bed all day instead of most of the day.

Getting diagnosed and treated for POTS is like going to war with the medical profession. Most doctors don't understand autonomic dysfuction and they aren't willing to take the time to learn about it. Every time I go to a doctor I feel like I have to convince him that my symptoms are real and serious enough to be taken seriously. If I want to try a new drug, I have to convince him why it might help me. It should be the other way around. They get paid for their supposed expertise, but in my experience, they are really getting paid to stand in the way of me getting better. Anyway, as hard as it is, getting the right treatment is important. Everybody deserves to feel well if possible. Before I got on Midodrine and a beta blocker I had tachycardia pretty much all the time, even lying down, and I felt sick all the time. Now at least I feel normal-ish when I am in bed. Of course as soon as I get up and try to do something I am sick again, but that is my life now.

I wake up naturally (alarm clocks=adrenaline rush), take my pills, eat something, drink a lot of water, and lie in bed until I feel like moving (about and hour usually). Then I take a shower (quick and cold) and go back to bed for another half hour. Then I get dressed and go back to bed for another half hour. It is frustrating because I feel like I am wasting so much time, but if I don't do it this way I will be sick the whole day. For this reason, I have to avoid making plans and appointments in the morning. This is pretty much how I spend my whole day, going back to bed to recover from every little thing I try to do, but the mornings are the worst.

I took it for about 3 weeks then stopped because there were no noticable improvements. Thinking about trying again though.

This is great!

Caiffiene helps me a little when I need a little extra vasoconstriction on top of my Midodrine or before it kicks in. I just have to be careful not to dink too much or it will make my tachy worse.

Thanks for the response. Does Zantac and Zertec help? Do they make him drowsy? Antihistamines have always made me sleepy, even the non-drowsy kind. But if it helps with other symptoms it is certainly worth a try.

Anyone?

I would have to say my weirdest symptom is pupil dysfunction. It is so strange to look in the mirror and find that one pupil is bigger than the other.

I know this has been addressed before, but I would like to get some updated info on what meds (and doses) those of you with MCAS are taking and how they are working for you. I am going to be asking my doctor about MCAS. Chances are, he will probably just tell me to take some OTC antihistamines and see what happens, so I would like to have some kind of a game plan ready when I go in.

I agree, 5 minutes is not enough to rule out POTS. If they had only kept me up there for 5 minutes, they would not have diagnosed me and I would not be on the medication I desperately need.

If you haven't found it already, here is a good website on Thyroid issues: http://www.stopthethyroidmadness.com/

I took Levothyroxine for the first 6 months after I was diagnosed with Hypothyroidism (later dx'd with Hashi's). I got worse, rather than better. I have been on Armour for about a year and a half. I am doing a better on it, but still struggling to find the right dose. I have read a lot about it and the general opinion seems to be that Armour is better, but it really depends on the person. My mom is on Levothyroxine and she is doing fine. My problems with it may stem from my POTSy chemical sensitivities. If your mom is still symptomatic with the meds or is having side effects, I think it would be a good idea to discuss Armour with her doctor.